won*der*ful 1. capable of exciting wonder : ASTONISHING. 2. Excellent : extraordinary. 3. Center for the Deaf and Hard of Hearing.
Today was AJ's last day in toddler group at CDHH. We haven't had group for two weeks, since this is the time of year they conduct the Family Learning Vacation and use the next two weeks for staff planning. I didn't he'd miss group much, but the second week I could see he was craving that routine.
He did well today, considering. We had two new friends join the toddler group today, so it was a bit chaotic. It was odd to be on the other side of the fence. It seems like we just began group-when really it was back in March. Back before he was implanted! He has grown so much since then.
At the end of group, AJ's teacher told the story about AJ going to school tomorrow. How he would get up, take his pajamas off, put his clothes on, eat breakfast, say bye to Daddy, brush his teeth, hop in the car with Mom and drive to school. AJ was having a hard time in the middle of group, so his teacher asked me to come in and sit with him during his story. He didn't really "get it", but he did enjoy shaking each of his friends hands and saying "Goodbye". He gave his teacher plenty of last snuggles. It amazes me how he perks up and listens when he hears that its her voice.
He was the last to sit in his teacher's lap and hear his "Bye Bye" song. It made me so sad. We sat and chatted with the staff for a while and they gave us a photo book for AJ. When we pulled into our driveway at home, I opened the photobook...and started bawling. The book was full of pictures of AJ during his time at group. They even wrote him a little note in the beginning of the book, and put stickers with captions on each picture.
CDHH has been a lifesaver for us. It is the only center of its kind in Wisconsin. We are so blessed to have it in our backyard (ok a bit further, but you get the point). It wasn't until Chris started coming out from CDHH that we felt someone was listening to us about AJ's hearing loss. She taught me many of my first signs before I took the classes. She gave us a "home program" for AJ to help us work with him during the week. She stopped at Starbucks and brought me coffee when she knew I needed it. She listened when no one else would. She called to make sure we were ok after we had a hell of a day and she knew it. I seriously think therapist should be in her title.
AJ's teachers in the toddler group were very accepting and PATIENT with our little man. They constantly asked if there was anything else they could do for him and told me not to hesitate to tell them if I had any ideas of suggestions. They celebrated his triumphs. They experienced his rough days. The entire staff hosts a tremendous amount of experience and kindness. They introduced my son to the world of sound. We are so blessed to have CDHH in our lives. While ending our weekly TOD sessions and toddler group closes another chapter in AJ's story, I have no doubt CDHH will continue to be part of our lives. We are excited to participate and be part of the planning of the first HLAA Walk for Hearing here in Milwaukee, WI and look forward to CDHH's annual events.
A very sincere THANK YOU to Chris, Nancy, Kelli, Amy, Crystal, Leslie, Stephanie, Ruth, and Jill!!!
Here are some photos from today:
Playing with his favorite toy at group:
Visuals to help tell AJ's story:
AJ's teacher, Nancy, taking "Mom and AJ" out of the car to walk into school:
Shaking hands and saying "Goodbye" to all his friends:
"Bye Bye AJ, Bye Bye AJ, Bye Bye AJ, its time for you to go":
Photobook:
Picture inside the photobook of AJ painting (table time art was his favorite activity):
Monday, August 31, 2009
Sunday, August 30, 2009
Ready?!
Last week Thursday was "Meet the Teacher" night at AJ's new school. It went better than we had expected. Not to say there weren't some minor bumps...:) There have to be some, otherwise this blog would be Booooooring.
Bump #1: The front the school is on a main street, so there is no parking in the front. The side lots are down the side hills and a steep and long walk. I pulled into one of the side lots and had to think if I was going to have AJ walk all the way or part way. I opted for part way, for safety and to help reserve his energy for the classroom. I carried him from the parking lot to the side of the building and put him down to walk. We were the slowest people on that sidewalk. Kids and their families would turn and look at us as we walked by. My guess is that most of them assumed he was a sibling. He was also the smallest child-kinda freaked me out. Not like I didn't already know, but the rest of the kids looked like giants as we walked into this new land. Anyhow, he made it from the side of the building, to the front entrance, down the hall to his classroom. He let his feet go and did his classic "hang like a monkey" (oh so NOT good for his muscles/CP). But I was uber proud that he made it in and down the hall. We greeted his teacher, Mrs. S, and AJ took off into the classroom without me. Alright then.
His teacher had mentioned she would ask the school PT, OT, and SLP to come that night so they could meet AJ and we could meet them. They were all there! We recognized the SLP-as she was there in January when we toured the school. I remember watching her do a speech session inside the soundbooth-in the classroom!
Bump #2: AJ took interest in the bathroom that connects the TC classroom from the AO classroom. Quite an interest. He wanted to play with the lego the OT gave in the stall. I don't think so! After many times of taking him out and saying/signing "NO", the SLP finally closed the door. And Meltdown #1 commenced. It wasn't horrible, but I felt myself sweating and becoming very nervous. Eventually he ended up in the middle of the classroom, just sitting with a few trains, and checking everything/everyone out. Many of the children came in hiding behind Mom or Dad and rubbing their eyes as if to hide. Too cute.
After about 10 minutes, AJ was up and at it again. In came Daddy, who had given himself a frustrating tour of Waukesha while trying to get to Lowell. AJ found the snack/circle time table which had all of the handouts on the table. Of course he wanted each piece of paper. We decided it was a better idea for him to color at the table. He colored like a champ; his teacher and the PT were impressed with his coloring skills.
The chairs they have at the table are just adorable. Mrs. S pointed out the Rifton chair that they have for AJ to use. I'm not so sure about it. The other children's chairs are similar, except the back/legs/seat do not adjust/angle. But, while he was coloring, we had him in one of the other chairs. Other than sliding down (which we use shelf liner on the bottom of his seats to prevent), he did great. They even had a block so he could rest his feet on something. This helps, not hinders. It helps him work less to sit up and do the task at hand. We'll have to see how this goes. The Rifton chair is the proper table height, but you can't push it in, so he's further away from the table. I noticed little laminated school themed cut-outs with the kids names on them. We looked at all but AJ's. We assumed his was on the Rifton. We'll save that for Tuesday.
While he was coloring, we gathered the handouts we didn't already have and spoke more with Mrs. S and his PT. When he was finished coloring, he took off with one of the pyramid crayons. Uh Oh. AJ quickly found the window to the soundbooth and thought it was a cool place to hang out and look at himself...and giggle. We met one of his classmates parents who were very nice. He even sat down to make a construction paper puppy (Dogs/Puppies are the first theme for the classroom)with Mrs. S. He has never, ever used Elmer's glue before. Got the hang of that right away, which impressed us. And he didn't have a problem sticking his fingers in it and getting all "peely" when it dried.
Bump #3: All was well until it was time to go and he had to put the playdoh down. Commence Meltdown #2. He was done. Cooked. Mad that he couldn't have what he wanted. Overstimulated, with his SID kicking in big time. We left and discovered doors closer to his classroom (YAY!) and walked down to the parking lot. He still screamed a bit in the car, but after I while he calmed.
All in all the night went very well. There are 6 kids in the classroom, including hearing peers. What an awesome number! What concerns us is that the rest of the kids are 4 already. This means that not only is AJ the youngest in age, he's way behind the rest of the class developmentally. I was sort of "studying" the other kiddos last week and I really do think its going to be fine. I know that Mrs. S will make sure AJ is as much part of the class as the other kiddos. I have this fear that his issues will be too great for the school to handle and he'll be out. I know, its a stupid fear. But in all honesty, many people have shown that AJ's issues are too much for them. They either ignore it or him totally, and/or us. While I realize these are professionals, they are humans too. There are bound to be good days and bad days. It's just a stupid fear.
It was wonderful to be around parents of other D/HOH children. We felt like we didn't have to explain anything. And our children's D/HOH was not the focus. We were parents. They were preschoolers. No one asked me what level of hearing loss AJ had. While I'm sure that question will come up, which is no problem, it was still nice not to have that be a prerequisite to speaking to another parent. No one asked us what else was wrong with him. During a conversation with another kiddo's Mom & Dad, the Dad said, "Oh, I think our boys will get along just fine." And I think he's right.
We thought it was sweet when former students of Mrs. S (whom we saw when we observed in January) came in to say hello to Mrs. S...their faces lit up like Christmas trees when she remembered them. I was interested to see how she would incorporate sign language in her classroom. It was so natural, and she did not stop using her voice. Did I mention how awesome she is?!
This is a huge milestone for AJ. And a scary milestone for him Mom. For the last two years, I have done nothing but pour ALL of my energy into providing whatever AJ needs. I will admit that in that I lost a bit of myself...it happens. I wouldn't change it for the world. What a revelation it is to us now why we chose for me to be a stay-at-home Mom. AJ wasn't even in the picture before we decided that. While his schedule has been more than demanding, the benefits he's received make it all worth it. This is the first time we will be dropping him off and letting someone else do the work. While he's been in toddler group, I'm required to stay in the parent observation room. And this is not about a typical "Letting Go" issue. It's just not. It is so much more than that. When you are required to be "ON" all the time, its hard to learn to hit the "SNOOZE" button or *gasp!* the "OFF" button when its not in your routine. I want him to go to school, he needs it and I have no doubt he'll thrive under Mrs. S. He'll do great. And so will his Mom.
Wednesday, August 26, 2009
Summer Vacation 2009
We took a trip to Green Lake, WI and Cedar Rapids, IA earlier in August.
Jeremy had a one-day conference at a gorgeous hotel on Green Lake so we drove up as a family, stayed overnight, and then left for Iowa the next day after Jer's conference was over. Here are some gorgeous shots of Green Lake we discovered while Dad was hard at work.
Haley was once again here, which was such a blessing. She had been here for almost a week, helping us with AJ. Instead of taking the train back, she just rode to Iowa with us! While Jer was at his conference we took AJ to the hotel pool. I am not kidding you-I have never seen this type of kiddie pool in a hotel before. At least not one without the waterpark attached to it. It was awesome! AJ absolutely loved it, and we played between the kiddie pool and regular pool for two hours. AJ enjoys being in his new carseat and really enjoyed the ride to Iowa.
Over the weekend we enjoyed the Corn Fest at Grandma & Grandpa's church. AJ did a great job of eating his way through and went on his first ride, the Carousel. It was very exciting that he was able to enjoy something at the Corn Fest. We were a little disappointed he couldn't go down the big slide with Haley (no double riding), and was too small and wouldn't understand to sit and stay in the train ride, but at least he was able to go on the Carousel. They had an entire Kiddieland Tent set up. AJ fished, picked a duck, threw a football, and picked a sucker from the sucker tree. It was really cute.
The next morning we headed to the Amana Colonies for some yummy breakfast with the breakfast group. AJ loved the European style pancakes. We enjoyed the neighbor's pool...AJ is such a natural in the pool. And we can't forget the always hilarious games of Catch Phrase.
On our way home we stopped in Cambridge, WI. "Our" bed and breakfast, Lake Ripley Lodge, is located there, right on Lake Ripley. We've come to know the owners rather well, and after many failed attempts, decided to stop so they could meet AJ. Jim and Janice are such wonderful people! They were very excited to see us and we enjoyed our visit with them. Janice is a former SLP, so we chatted abou cochlear implants and how AJ was doing with it. It just about melted my heart when she signed shoes and socks to him on the porch. While she offered us "our" room, we left for home. We are anxious to get back there, as we haven't been all year! It is the perfect getaway-only about an hour away and driving distance to Madison. Maybe this fall...
Back to this vacation:
Thanks for having us Grandma & Grandpa Nutt!
Jeremy had a one-day conference at a gorgeous hotel on Green Lake so we drove up as a family, stayed overnight, and then left for Iowa the next day after Jer's conference was over. Here are some gorgeous shots of Green Lake we discovered while Dad was hard at work.
Haley was once again here, which was such a blessing. She had been here for almost a week, helping us with AJ. Instead of taking the train back, she just rode to Iowa with us! While Jer was at his conference we took AJ to the hotel pool. I am not kidding you-I have never seen this type of kiddie pool in a hotel before. At least not one without the waterpark attached to it. It was awesome! AJ absolutely loved it, and we played between the kiddie pool and regular pool for two hours. AJ enjoys being in his new carseat and really enjoyed the ride to Iowa.
Over the weekend we enjoyed the Corn Fest at Grandma & Grandpa's church. AJ did a great job of eating his way through and went on his first ride, the Carousel. It was very exciting that he was able to enjoy something at the Corn Fest. We were a little disappointed he couldn't go down the big slide with Haley (no double riding), and was too small and wouldn't understand to sit and stay in the train ride, but at least he was able to go on the Carousel. They had an entire Kiddieland Tent set up. AJ fished, picked a duck, threw a football, and picked a sucker from the sucker tree. It was really cute.
The next morning we headed to the Amana Colonies for some yummy breakfast with the breakfast group. AJ loved the European style pancakes. We enjoyed the neighbor's pool...AJ is such a natural in the pool. And we can't forget the always hilarious games of Catch Phrase.
On our way home we stopped in Cambridge, WI. "Our" bed and breakfast, Lake Ripley Lodge, is located there, right on Lake Ripley. We've come to know the owners rather well, and after many failed attempts, decided to stop so they could meet AJ. Jim and Janice are such wonderful people! They were very excited to see us and we enjoyed our visit with them. Janice is a former SLP, so we chatted abou cochlear implants and how AJ was doing with it. It just about melted my heart when she signed shoes and socks to him on the porch. While she offered us "our" room, we left for home. We are anxious to get back there, as we haven't been all year! It is the perfect getaway-only about an hour away and driving distance to Madison. Maybe this fall...
Back to this vacation:
Thanks for having us Grandma & Grandpa Nutt!
Friday, August 21, 2009
The Great Blue /sh/
Let me first say CLICK HERE to read about the 6 Ling Sounds. Be sure to scroll down a bit when you get to the page-as it lists the Ling 6. These are crucial for children with CIs. The rest of this post will then make sense (unless you are a CI Momma and then well, you already know!)
It has always amazed me that the /sh/ sound has always been one of the strongest of the Lings that AJ hears. It is often one of the hardest.
One afternoon I found AJ and myself bored with our normal daily play activities. I pulled out his Ling Box and stared for a while. Somehow, food coloring popped into my head. I grabbed AJ's little watering can, some food coloring, and we headed into the bathroom.
I wanted to play with the /sh/ sound a little bit, short & long, and came up with this!
Vocabulary Used During This Activity:
Wait!
Pooooooooooooooouuuuuuurrrr
Splash, Splash, Splash
Fill it up!
Water
Say help!
Weeeeeeeeeeeeee
Listen...(pause) "sshhhhhhhhhhhhh" while pouring water
Colors: blue,green
Put it on! (watering can top)
It has always amazed me that the /sh/ sound has always been one of the strongest of the Lings that AJ hears. It is often one of the hardest.
One afternoon I found AJ and myself bored with our normal daily play activities. I pulled out his Ling Box and stared for a while. Somehow, food coloring popped into my head. I grabbed AJ's little watering can, some food coloring, and we headed into the bathroom.
I wanted to play with the /sh/ sound a little bit, short & long, and came up with this!
Vocabulary Used During This Activity:
Wait!
Pooooooooooooooouuuuuuurrrr
Splash, Splash, Splash
Fill it up!
Water
Say help!
Weeeeeeeeeeeeee
Listen...(pause) "sshhhhhhhhhhhhh" while pouring water
Colors: blue,green
Put it on! (watering can top)
Thursday, August 20, 2009
The Jist
PT:
AJ's hyperextension of his left knee has become cause for concern. After much thought and many discussions between us, AJ's PT, and AJ's physical medicine doctor (CP doc), he will begin wearing bilateral AFOs-Ankle Foot Orthotics. I took him in today to be measured for the AFOs. Little did I know he'd have each of his feet cast for 10 minutes to create the fiberglass cast from which they make the AFOs. His orthotist (who is THE BEST in the area) said he didn't think his smallest patient of the day would be his strongest. He kept pushing his foot against his orthotist's hand (who was trying to shape the bottom of the fiberglass tape as it dried) and was making this procedure very difficult. As we were wrapping things up, his orthotist recommended having AJ wear an AFO on his left leg but keeping his current SMO on the right foot. I told him to duke it out with our PT. We'll see what they come up with.
In the meantime, AJ is wearing a theraband around his left leg, wrapped counter-clockwise. The way he walks with it on is like night and day. The theraband will do the trick until we get his AFO(s). I'm having a hard time finding shorts in AJ's wardrobe that have belt loops to tie the band behind him. (Safety pins aren't strong enough) I'm also having a hard time being consistent in having him wear it. Sometimes it really sucks that he has to wear socks, SMOs, and shoes in hot weather. Yesterday his left foot was turned in really bad. Bad Mommy Bad Mommy! But his walking deteriorates when we don't do it-so we have to keep it up. His walking may be cute now, but won't be so cute when he's 15.
AJ saw his (well another doc in the practice) physical medicine doctor earlier this month. She was happy with his progress. No botox injections. No medications for spasticity. She is leaning more towards a specific diagnosis of hemiplegia than quadraplegia. She did request a baseline x-ray be done on AJ, checking his bones, hips, and checking for scoliosis. Now that he is 3, this is about the time baselines are done, so we have a place to refer back to as he grows. Muscles do not grow as fast as bone, so when AJ grows, he gets stiff and tight. It takes a while, given his random spasticity, for his muscles to catch up. She wrote out four prescpiptions while we were there: 1) AFOs 2) SPIO vest 3) Hand Splint 4) Baseline x-ray.
AJ's PT suggested AJ wear an abdominal support vest to connect his upper body to his lower body. Right now he has no clue these two things work together. He needs that extra input. After researching SPIO vests, insurance, etc. we decided to go an alternate route. We are searching for a gymnastics leotard that is small enough for AJ. The lycra material will give him the input he needs. It will be worn underneath his clothing. We continue to work on walking farther without assistance, walking on uneven surfaces, and climbing. We just got a new carseat for him (thanks Grandma & Grandpa Nutt) that he fits into much better. He's no longer lounging when he sits and the seat is flatter and is a bit shorter, so his legs hang properly. Plus, it sits a little higher in the car, so he loves it!
OT: AJ has been doing well with fine motor skills. He's using his left hand more and more, and bears weight on it just fine. The only concern is that when he's not actively using it, its going back into a fist position. He also refrains from using it during eating, coloring, etc. His OT suggested a soft hand splint to help keep his hand open. We will see the OT department at Children's next week for measurments. He loves to play with shaving cream, fingerpaints, anything he can smush around. He also loves table activities. It happens to be his favorite time during toddler group.
We are working on helping him dress himself. We've been doing PT/OT co-treatment sessions, which I absolutely love. Last week they had him walking on the uneven hill towards flags in the ground and placed plastic hawaiian leis around his neck so that he had to take them off. We are also working on drawing a circle shape and continue to work on "IN". He gets it, it just depends on if he thinks the toy is fun or not. Sigh.
GI: In early August, I somehow scheduled 3 appointments @ Children's all back to back in the morning hours. GI was our first appointment of the day. AJ LOST WEIGHT. And not just a little, a lot. 7 oz. He was down to 21.1# BUT got taller, at 33.1in. He grew 0.5in in just 2 weeks. But the loss was freightening. Jeremy and I had taken AJ off the Pediasure, giving him whole milk with just flavoring packets. We felt so incredibly guilty, althought it was probably a combination of less liquid calories, his typical toddler diet (some days I eat lots, some days not so much), and his constant movement now that he's mobile.
While it is fantastic he's getting taller, it makes him that much thinner on the charts. I was surprised to hear his percentage only dropped from 86% to 85% of his ideal body weight. As always, they will be happier when he's 90% or above. We have put him back on the whole milk with carnation instant breakfast. same thing as pediasure, same calories, but way cheaper. He continues to be on a high calorie diet. If anyone has a brilliant idea on how to get his vitamins into him, I'd be happy to hear it. Crushing and mixing with food only works with certain foods. Someone needs to make one in a liquid form! His GI dietician is working with our insurance company to see if we can't get Pediasure covered by insurance. Only thing: AJ is an oral eater, so they may not cover it. Oiy. You just can't win!!
Speech: AJ has made some strong gains in speech. His receptive language has definitely improved. We have moved on from the box of noisemakers etc. He now does activities at the table with his SLP. The last two weeks have been the biggest.
He:
-Functionally played with a mailbox toy, putting the "letters" (plastic discs) into the mail slot, then opening the door to get them all out, pulled them all out, closed the door, and put them all in again.
-Heard all Lings when his SLP did them
-Took airplane and did /ah/ sound multiple times
-Took bunny and made it "hop" when his SLP said hop, hop, hop
He's hearing more and more each day. He still choses when to ignore speech though. And we've definitely seen how hard it is for him to hear in noisy environments. Even when just the TV is on. I pulled out all of the "tests" that AJ's therapy staff uses, and was surprised to see he had made gains in each area. I'll have to post that info later.
On Wednesday, I was just playing around with knocking on his tray at Great Grandma's house. He started knocking. Hm. I then thought, lets just see what he does. So I said "Knock Knock" and he knocked on his tray and looked up. We repeated this several times (a few times using my hand as a screen-some closet AVT goin' on here). He did it yesterday and this morning, so I'm pleased to say he understands the auditory cue "knock knock".
CI: AJ had another booth testing (3 month post-activation) in late July. He did well, but his audi decided to change the way the implant is firing instead of turning the volume up. He had 12 channels firing, she turned 3 of them off. This will help make the implant work faster and in turn, provide more stimulation. We will see his audi again in October for his 6 month appointment. He isn't the best booth tester, so this is where we are. He is probably somewhere in the 35-40db range as far as what he's hearing. He continues to wear the babyworn set up, with the processor pinned to his shirt. But if you want me to be honest, its driving me nuts. Not sure that we're ready for the BTE (Behind the Ear) set-up yet. We find outselves frustrated with him not hearing in the car (falls off). He's still wearing it every day, all day.
Feeding: Is back to haunt us. AJ's molars still haven't popped through. Which makes his mouth sensitive and he tends not to want to chew. Yes, my 3 year old is still teething, and no its not normal. Because AJ was so malnutritioned for the first 13 months of his life, he's behind in tooth growth. His dentist thinks by December they should be in. 2 have popped through, the other two are still just swollen. I wouldn't want to chew either. It was so bad a few weeks ago we almost put him back on baby food. He was choking on everything and mealtimes became a nightmare. We don't do regression well. He's improved, although some foods are tougher than others. Why AJ will crunch on a fruit loop or corn pop and not a graham cracker is beyond me. We've pulled out the Nuk brush, Z-vibe, and his entire oral motor therapy kit again. It seems to be helping.
SID: Sensory Intergration Dysfunction. AJ's SID has kicked in an awful lot over the last few weeks. He had a complete meltdown-like I've never seen-in toddler group last week, and then again at the end of his speech session the very next day. Of course he had the meltdown the day his future teacher came to observe! He may need a sensory diet when he begins school. More about his SID in another post.
Toddler Group/School: AJ has been doing very well in toddler group(minus the day mentioned above). We've been practicing sitting on our carpet square here at home and reading books. His sitting during circle time has really improved. The week before his meltdown he sat through both middle and end circle times like a champ. He even listened and partcipated. They had their summer swim party last week-it was so cute. They kids had a blast in the little kiddie pools, complete with circle time outside, playground time, and a fabulous ice cream dessert. He really enjoys the art projects/table time and recently discovered this stacking disc thing. Hard to explain, but when you stack it, each disc does something. AJ figured out how to stack it and undo it, and then if he had the pieces wrong, he'd take them apart and stack it properly. Holy cognition! I am sad to say his last day at CDHH toddler group will be 8/31. We've worked with CDHH for so long. :( All good things must come to an end.
AJ's new teacher has been so awesome. She's observed him here at home during OT, at speech, and at toddler group. We've been corresponding over the entire summer. We've discussed everything from a Rifton chair, to snack time/nutrition needs, to circle/reading time, to purple glue sticks. We've purchased all of his school supplies, and even found a backpack that should work for him. We have meet the teacher night next week and he'll have his first day of school on Tuesday 9/1. He'll be going to school M-Th in the mornings.
AJ's hyperextension of his left knee has become cause for concern. After much thought and many discussions between us, AJ's PT, and AJ's physical medicine doctor (CP doc), he will begin wearing bilateral AFOs-Ankle Foot Orthotics. I took him in today to be measured for the AFOs. Little did I know he'd have each of his feet cast for 10 minutes to create the fiberglass cast from which they make the AFOs. His orthotist (who is THE BEST in the area) said he didn't think his smallest patient of the day would be his strongest. He kept pushing his foot against his orthotist's hand (who was trying to shape the bottom of the fiberglass tape as it dried) and was making this procedure very difficult. As we were wrapping things up, his orthotist recommended having AJ wear an AFO on his left leg but keeping his current SMO on the right foot. I told him to duke it out with our PT. We'll see what they come up with.
In the meantime, AJ is wearing a theraband around his left leg, wrapped counter-clockwise. The way he walks with it on is like night and day. The theraband will do the trick until we get his AFO(s). I'm having a hard time finding shorts in AJ's wardrobe that have belt loops to tie the band behind him. (Safety pins aren't strong enough) I'm also having a hard time being consistent in having him wear it. Sometimes it really sucks that he has to wear socks, SMOs, and shoes in hot weather. Yesterday his left foot was turned in really bad. Bad Mommy Bad Mommy! But his walking deteriorates when we don't do it-so we have to keep it up. His walking may be cute now, but won't be so cute when he's 15.
AJ saw his (well another doc in the practice) physical medicine doctor earlier this month. She was happy with his progress. No botox injections. No medications for spasticity. She is leaning more towards a specific diagnosis of hemiplegia than quadraplegia. She did request a baseline x-ray be done on AJ, checking his bones, hips, and checking for scoliosis. Now that he is 3, this is about the time baselines are done, so we have a place to refer back to as he grows. Muscles do not grow as fast as bone, so when AJ grows, he gets stiff and tight. It takes a while, given his random spasticity, for his muscles to catch up. She wrote out four prescpiptions while we were there: 1) AFOs 2) SPIO vest 3) Hand Splint 4) Baseline x-ray.
AJ's PT suggested AJ wear an abdominal support vest to connect his upper body to his lower body. Right now he has no clue these two things work together. He needs that extra input. After researching SPIO vests, insurance, etc. we decided to go an alternate route. We are searching for a gymnastics leotard that is small enough for AJ. The lycra material will give him the input he needs. It will be worn underneath his clothing. We continue to work on walking farther without assistance, walking on uneven surfaces, and climbing. We just got a new carseat for him (thanks Grandma & Grandpa Nutt) that he fits into much better. He's no longer lounging when he sits and the seat is flatter and is a bit shorter, so his legs hang properly. Plus, it sits a little higher in the car, so he loves it!
OT: AJ has been doing well with fine motor skills. He's using his left hand more and more, and bears weight on it just fine. The only concern is that when he's not actively using it, its going back into a fist position. He also refrains from using it during eating, coloring, etc. His OT suggested a soft hand splint to help keep his hand open. We will see the OT department at Children's next week for measurments. He loves to play with shaving cream, fingerpaints, anything he can smush around. He also loves table activities. It happens to be his favorite time during toddler group.
We are working on helping him dress himself. We've been doing PT/OT co-treatment sessions, which I absolutely love. Last week they had him walking on the uneven hill towards flags in the ground and placed plastic hawaiian leis around his neck so that he had to take them off. We are also working on drawing a circle shape and continue to work on "IN". He gets it, it just depends on if he thinks the toy is fun or not. Sigh.
GI: In early August, I somehow scheduled 3 appointments @ Children's all back to back in the morning hours. GI was our first appointment of the day. AJ LOST WEIGHT. And not just a little, a lot. 7 oz. He was down to 21.1# BUT got taller, at 33.1in. He grew 0.5in in just 2 weeks. But the loss was freightening. Jeremy and I had taken AJ off the Pediasure, giving him whole milk with just flavoring packets. We felt so incredibly guilty, althought it was probably a combination of less liquid calories, his typical toddler diet (some days I eat lots, some days not so much), and his constant movement now that he's mobile.
While it is fantastic he's getting taller, it makes him that much thinner on the charts. I was surprised to hear his percentage only dropped from 86% to 85% of his ideal body weight. As always, they will be happier when he's 90% or above. We have put him back on the whole milk with carnation instant breakfast. same thing as pediasure, same calories, but way cheaper. He continues to be on a high calorie diet. If anyone has a brilliant idea on how to get his vitamins into him, I'd be happy to hear it. Crushing and mixing with food only works with certain foods. Someone needs to make one in a liquid form! His GI dietician is working with our insurance company to see if we can't get Pediasure covered by insurance. Only thing: AJ is an oral eater, so they may not cover it. Oiy. You just can't win!!
Speech: AJ has made some strong gains in speech. His receptive language has definitely improved. We have moved on from the box of noisemakers etc. He now does activities at the table with his SLP. The last two weeks have been the biggest.
He:
-Functionally played with a mailbox toy, putting the "letters" (plastic discs) into the mail slot, then opening the door to get them all out, pulled them all out, closed the door, and put them all in again.
-Heard all Lings when his SLP did them
-Took airplane and did /ah/ sound multiple times
-Took bunny and made it "hop" when his SLP said hop, hop, hop
He's hearing more and more each day. He still choses when to ignore speech though. And we've definitely seen how hard it is for him to hear in noisy environments. Even when just the TV is on. I pulled out all of the "tests" that AJ's therapy staff uses, and was surprised to see he had made gains in each area. I'll have to post that info later.
On Wednesday, I was just playing around with knocking on his tray at Great Grandma's house. He started knocking. Hm. I then thought, lets just see what he does. So I said "Knock Knock" and he knocked on his tray and looked up. We repeated this several times (a few times using my hand as a screen-some closet AVT goin' on here). He did it yesterday and this morning, so I'm pleased to say he understands the auditory cue "knock knock".
CI: AJ had another booth testing (3 month post-activation) in late July. He did well, but his audi decided to change the way the implant is firing instead of turning the volume up. He had 12 channels firing, she turned 3 of them off. This will help make the implant work faster and in turn, provide more stimulation. We will see his audi again in October for his 6 month appointment. He isn't the best booth tester, so this is where we are. He is probably somewhere in the 35-40db range as far as what he's hearing. He continues to wear the babyworn set up, with the processor pinned to his shirt. But if you want me to be honest, its driving me nuts. Not sure that we're ready for the BTE (Behind the Ear) set-up yet. We find outselves frustrated with him not hearing in the car (falls off). He's still wearing it every day, all day.
Feeding: Is back to haunt us. AJ's molars still haven't popped through. Which makes his mouth sensitive and he tends not to want to chew. Yes, my 3 year old is still teething, and no its not normal. Because AJ was so malnutritioned for the first 13 months of his life, he's behind in tooth growth. His dentist thinks by December they should be in. 2 have popped through, the other two are still just swollen. I wouldn't want to chew either. It was so bad a few weeks ago we almost put him back on baby food. He was choking on everything and mealtimes became a nightmare. We don't do regression well. He's improved, although some foods are tougher than others. Why AJ will crunch on a fruit loop or corn pop and not a graham cracker is beyond me. We've pulled out the Nuk brush, Z-vibe, and his entire oral motor therapy kit again. It seems to be helping.
SID: Sensory Intergration Dysfunction. AJ's SID has kicked in an awful lot over the last few weeks. He had a complete meltdown-like I've never seen-in toddler group last week, and then again at the end of his speech session the very next day. Of course he had the meltdown the day his future teacher came to observe! He may need a sensory diet when he begins school. More about his SID in another post.
Toddler Group/School: AJ has been doing very well in toddler group(minus the day mentioned above). We've been practicing sitting on our carpet square here at home and reading books. His sitting during circle time has really improved. The week before his meltdown he sat through both middle and end circle times like a champ. He even listened and partcipated. They had their summer swim party last week-it was so cute. They kids had a blast in the little kiddie pools, complete with circle time outside, playground time, and a fabulous ice cream dessert. He really enjoys the art projects/table time and recently discovered this stacking disc thing. Hard to explain, but when you stack it, each disc does something. AJ figured out how to stack it and undo it, and then if he had the pieces wrong, he'd take them apart and stack it properly. Holy cognition! I am sad to say his last day at CDHH toddler group will be 8/31. We've worked with CDHH for so long. :( All good things must come to an end.
AJ's new teacher has been so awesome. She's observed him here at home during OT, at speech, and at toddler group. We've been corresponding over the entire summer. We've discussed everything from a Rifton chair, to snack time/nutrition needs, to circle/reading time, to purple glue sticks. We've purchased all of his school supplies, and even found a backpack that should work for him. We have meet the teacher night next week and he'll have his first day of school on Tuesday 9/1. He'll be going to school M-Th in the mornings.
Labels:
cerebral palsy,
challenges,
medical,
preschool,
therapy
Tuesday, August 11, 2009
Such a Big Boy Picture...
Saturday, August 1, 2009
Reflection: Part 11
First Picture of The Schmidt's in the United States We woke up the next morning and I was still nervous. Jer's cousin's wife noticed and took me to the store to buy some last minute items, things that helped her on their return trip with their children. I was bawling on the way to the airport. When I hugged her, I didn't want to let go. We waited for what seemed like forever to board our plane to Milwaukee. AJ fell asleep on his quilt on the floor. I remember people passing him and saying "Awwww".
We were lucky to get the bulkhead seats thanks to a very nice couple that ended up behind us. THANK GOD. We began feeding him his bottle, like you normally would and then we got stuck on the tarmat for a very, very, very long time. AJ was sleeping when we finally went up. Whew. The first 1/2 hour of our flight was just fine.
And then AJ started getting sick. I mean sick. I mean violent-projectile-vomiting. And were on a freakin' airplane, how many thousands of feet in the air?! OMG. OMG. Thank goodness for our flight attendant and the fact that no one could see us or hear us/him. He would calm and then start again. This kid was using his whole body and then some. I was running out of wipes and rags and the napkins we were given. We were terrified and didn't know what to do. He finally passed out and we held hands and prayed together that he would stay sleeping and rest until we got to Milwaukee....
He did. As we were deplaning a woman said, "Oh, she's beautiful." I gave a half-smile and walked up to the gate. As I walked "up" I could feel AJ's body tensing up and just knew what was about to happen. I started running as fast as I could to the family bathrooms. Locked. GREAT. Some single guy comes walking out as I'm holding AJ to my chest. Idiot. We took him to the bathroom, stripped him down. I tried to cool him down with wet paper towels as Jer called the pediatricians office.
CHAOS.
They told us to withhold liquid for at last an hour and to watch him. If it happened again, we needed to bring him in. Ok. I took off my sweater and ended up sporting a not-so-attractive tank-top. Jer did his best to clean himself up and we tried to pull it together.... After all, we had family and friends waiting for us at the end of the terminal. Not only was our plane late, but we had all this drama with AJ getting sick, we needed to get there ASAP.
We don't remember walking up the terminal. I remember seeing a sign for AJ and then repeating "he was violently ill on the plane" and our family and friends saying "He's so tiny, Oh, he doesn't look good." He was literally a limp noodle on my shoulder. Somehow we ended up with baggage and walking to our car. When we got him into the carseat, we felt a sense of relief. Let's go home. And do absolutely nothing.
He fell asleep almost immediately when we started driving. And then it happened again. And again. And again. We called the pediatrician's office again, which was useless by the way. I felt AJ's forehead and it literally felt like FIRE. I told Jer (who was driving), you choose, Urgent Care or Children's ER. He chose Urgent Care. I have never, never seen him drive so fast.
We pulled in and were seen right away. AJ had a fever over 101, an upper respiratory infection, and double ear infections. His poor little body. He weighed in at 13lbs 8 oz. Thank God the UC doctor was a colleague of Jeremy's, that made it much less nerve-racking. Ok, maybe just a little. He told us we didn't have to see our pediatrician the following day. (We had scheduled the appointment ahead of time as his initial visit). Um, yeah. We decided to still keep that appointment, especially after this incident. He fell asleep again, sleeping the whole way to Walgreens and all the way home. AJ Arriving Home We had never been so happy to be home. We walked him around the house a bit. I rummaged through our carry-on and found "the blanket". We took this blanket on every visit and would bring it home in a zip-loc bag for the dogs. I'd place it in his crib and take it out of the bag a bit, placing it between the slates of AJ's crib and have to dogs come and sniff the crib. (Before each visit I'd wash it!) We did this once a week until he came home. I pulled the blanket out and took it in by the dogs to sniff. Jer brought them out to meet AJ while I was feeding him and all went well.
They literally sniffed him and said, "Oh, its you. Ok, you're here. Cool." At least something went right that night. We finished feeding AJ and gave him a cool bath in our bathroom sink. Yep, he fit. We introduced him to his room and soon figured out that two very special animals were not about to leave his side. They were soon dubbed the "Three Amigos".
We turned on some lullaby music and placed AJ in his crib for the very first time. We've never been so excited to see our couch. To read mail. To sit and watch tv and know the channels. We were wired and exhausted at the same time. I think we were up really late that night.
We kept checking on AJ to make sure he was really here. And he was.
We Gotcha, AJ, We Gotcha.
We were lucky to get the bulkhead seats thanks to a very nice couple that ended up behind us. THANK GOD. We began feeding him his bottle, like you normally would and then we got stuck on the tarmat for a very, very, very long time. AJ was sleeping when we finally went up. Whew. The first 1/2 hour of our flight was just fine.
And then AJ started getting sick. I mean sick. I mean violent-projectile-vomiting. And were on a freakin' airplane, how many thousands of feet in the air?! OMG. OMG. Thank goodness for our flight attendant and the fact that no one could see us or hear us/him. He would calm and then start again. This kid was using his whole body and then some. I was running out of wipes and rags and the napkins we were given. We were terrified and didn't know what to do. He finally passed out and we held hands and prayed together that he would stay sleeping and rest until we got to Milwaukee....
He did. As we were deplaning a woman said, "Oh, she's beautiful." I gave a half-smile and walked up to the gate. As I walked "up" I could feel AJ's body tensing up and just knew what was about to happen. I started running as fast as I could to the family bathrooms. Locked. GREAT. Some single guy comes walking out as I'm holding AJ to my chest. Idiot. We took him to the bathroom, stripped him down. I tried to cool him down with wet paper towels as Jer called the pediatricians office.
CHAOS.
They told us to withhold liquid for at last an hour and to watch him. If it happened again, we needed to bring him in. Ok. I took off my sweater and ended up sporting a not-so-attractive tank-top. Jer did his best to clean himself up and we tried to pull it together.... After all, we had family and friends waiting for us at the end of the terminal. Not only was our plane late, but we had all this drama with AJ getting sick, we needed to get there ASAP.
We don't remember walking up the terminal. I remember seeing a sign for AJ and then repeating "he was violently ill on the plane" and our family and friends saying "He's so tiny, Oh, he doesn't look good." He was literally a limp noodle on my shoulder. Somehow we ended up with baggage and walking to our car. When we got him into the carseat, we felt a sense of relief. Let's go home. And do absolutely nothing.
He fell asleep almost immediately when we started driving. And then it happened again. And again. And again. We called the pediatrician's office again, which was useless by the way. I felt AJ's forehead and it literally felt like FIRE. I told Jer (who was driving), you choose, Urgent Care or Children's ER. He chose Urgent Care. I have never, never seen him drive so fast.
We pulled in and were seen right away. AJ had a fever over 101, an upper respiratory infection, and double ear infections. His poor little body. He weighed in at 13lbs 8 oz. Thank God the UC doctor was a colleague of Jeremy's, that made it much less nerve-racking. Ok, maybe just a little. He told us we didn't have to see our pediatrician the following day. (We had scheduled the appointment ahead of time as his initial visit). Um, yeah. We decided to still keep that appointment, especially after this incident. He fell asleep again, sleeping the whole way to Walgreens and all the way home. AJ Arriving Home We had never been so happy to be home. We walked him around the house a bit. I rummaged through our carry-on and found "the blanket". We took this blanket on every visit and would bring it home in a zip-loc bag for the dogs. I'd place it in his crib and take it out of the bag a bit, placing it between the slates of AJ's crib and have to dogs come and sniff the crib. (Before each visit I'd wash it!) We did this once a week until he came home. I pulled the blanket out and took it in by the dogs to sniff. Jer brought them out to meet AJ while I was feeding him and all went well.
They literally sniffed him and said, "Oh, its you. Ok, you're here. Cool." At least something went right that night. We finished feeding AJ and gave him a cool bath in our bathroom sink. Yep, he fit. We introduced him to his room and soon figured out that two very special animals were not about to leave his side. They were soon dubbed the "Three Amigos".
We turned on some lullaby music and placed AJ in his crib for the very first time. We've never been so excited to see our couch. To read mail. To sit and watch tv and know the channels. We were wired and exhausted at the same time. I think we were up really late that night.
We kept checking on AJ to make sure he was really here. And he was.
We Gotcha, AJ, We Gotcha.
Reflection: Part 10
We woke up early that Friday morning. Really early. Roberto was to pick us up at 10am. In Guatemalan time, that means between 10 and 11.
We waited and waited and finally called him. He stated he needed to take the boys to have their US Embassy examinations done. We were stunned that hadn't been done beforehand, but we didn't have much of a choice. He said he'd be done around 3 and would call us.
4 o'clock rolled around and we called again. No answer. We continued to call and finally received a call back stating he was done, just leaving the hospital with the boys, and would bring them to us. WHAT?! Ok fine, but that's weird. I guess we don't get back to the orphange, say goodbye and THANK YOU, and give our gifts in person. Fine. As long as we get AJ...As long as we get AJ.
At 5:45pm his car finally pulled around. We saw one of the nineras get out of the car and walk around the side. That told me that had dropped off one of the boys already. Then the other ninera got out with AJ. She carried him into the hotel with the other ninera and Roberto following her. I could barely concentrate. He was sleeping. He was tiny. Still. Roberto greeted us, gave us a giant folder and a giant envelope, and literally said, "Good Luck, Have a Nice Life." The ninera handed AJ to me and asked me if I wanted the blanket he was in. I declined. Why I remember that...Guatemalan's tend to dress their children in layers, warm layers, even when its 90-100 degrees outside. Roberto started to leave, rather abruptly, and we stopped him, saying we had gifts for him, the nineras, especially Sylvia-AJ's caregiver, and some other things. He said something swiftly to the nineras about the gifts and Sylvia, and left.
And there we were. In the dark-quiet lobby of our hotel, with this little boy. Who was now FOREVER OURS. For the first time in this whole process, I panicked. He was ours. We would be boarding a plane with him in a few days, and actually taking him home. Surreal. A wonderful family from Ireland saw us in our early forever moments with AJ and said (in his awesome Irish accent), "Is this him? AH, congratulations. I'll leave you be, this is a special time." And it was. We eventually pulled ourselves off the couch and took AJ upstairs. We stripped him down to his onesie. He woke up and gave us the sweetest grin. We fed him a bottle and a half (that he chugged)and put him on his Quilt of Love for the very first time. ****As I am writing this, I've been plowing through a box of tissues. As I write, I view the pictures in our "Pick-Up" trip folder on the computer. I think I've stayed away from these pictures (& most of all the videos) just for this very reason. I don't ever want to feel these emotions again. Yet I am, as I am writing I am thinking: How on earth could this have happened? How did no one know? How did we not know? How could they lie to us or just not see all of this? He can't hear me so why was I talking to him? Would it have been different if we knew? Could we have gotten him sooner? Now I watch the videos and see things that we didn't see then. What blinds me now is what I didn't see then. What blinded me then is what I can't see now. All these memories we had thought would be so perfect, are now so heartbreaking. And to think, it was only the beginning....****
We spent Saturday and Sunday bonding with our son and visiting with other families. When we first booked our trip, we were disappointed we've have to spend an extra two days in Guatemala. AJ was once again, SICK. Stuffy, congested, had a runny nose and a fever. He adjusted well to the "American" formula we had brought along and we figured out he still had not been given solids. Grr. He's not holding his bottle-thats strange since they prop them early on. Hm. The bald spot on the back of his head had gotten much larger, including a small oval-shaped area that was scar tissue. He stared at his hands. He banged his head in his crib. He was still a thumb sucker-how cute. He wasn't sitting up-at all. Hm...he's not responding to us all the time. Maybe he just ignores loud sounds since he's used to the orphange being loud. Yeah, thats it. Well see when we get home.
Early Monday morning we met with our translator/coordinator for our US Embassy appointment in our hotel lobby. He checked over our paperwork and walked us over to the Embassy.
It is an odd feeling watching Guatemalans look at you as you are entering the US Embassy with one of their own. It was not a hostile environment at all, but I can imagine there is some grief associated with seeing 50+ children and their new adoptive families enter the US Embassy each day. Think DMV. Busy. With lots of babies. That, in a nutshell, is the US Embassy.
Our translator/coordinator was wonderful. He lead us through each of the steps, most of which were waiting! We were told that the US Embassy doctor's report stated developmental delays. DUH. He was a premie, he's an orphange baby. Yeah, yeah, its all in place for when he gets home. AJ fell asleep shortly after we arrived and slept through the entire 4 hours we were there. He was officially ours in the eyes of the US. One of us had to return to the Embassy the next day to pick-up AJ's VISA.
We walked back to the hotel and put him down for a nap. I remember the outfit I put him in for the big day. It was a 3 month outfit that was big on him (at 13 months old), but we managed to make it fit. He looked like a little golfer. When he woke up we took him outside in the courtyard. It was an absolutely gorgeous day. We hung out with fellow families and watched AJ touch grass for the very first time.
The next afternoon we again, hung out with fellow adoptive families and waited for the "Dads" to come back from the Embassy with the VISAs. All went well. It was official-AJ could leave Guatemala and enter the US!
We went back to our room and started packing for our flight out the next morning, making sure not to forgot our precious cargo! That Wednesday morning I was wound very tight. I didn't even realize it till I had a near meltdown when suddenly AJ didn't like the Snuggli. We said our goodbyes and loaded into our regular taxi. We started driving and our taxi guy, congratulated us. (Guatemalan's do not use car seats, so AJ was on my lap) When we turned off of the main drag to take his shortcut to the airport, I began to cry. I felt joy. I felt pain. I felt guilt. I felt relief. I felt it all. Here we were taking this little baby away from everything he is supposed to know as life. Here we are fulfilling our dreams. We pulled up to the airport and received the typical "stares" from the locals and quickly made our way to the check-in counter. We tried to get an upgrade to First Class, no luck.
We boarded the plane by way of a new jetway that had glass walls. I started to cry again. I snapped a picture of Jer & AJ on the plane before we took off, cause I just didn't know what the flight would be like with a baby on board.
He was fine, after he decided to have a blow-out diaper as we went up. That fasten-seat belt sign could not go "off" fast enough! I was so worried about keeping him quiet. FYI, you can't hear diddly on a plane. Nevertheless, you can hear things as you descend. AJ screamed the entire descent, while the flight attendance said, "Oh, you can give them a bottle (Um, yeah, he didn't want it) or give them these drops." (Um, no pharmacy on board and I'm sorry, I"m doing the best I can). Needless to say, we deplaned and I was once again wound tight. AJ even whimpered as we rode down the escalators in the airport. I think his ears were still trying to adjust. We made our way to the line for customs/immigration and then sat in a very warm room while everyone went ahead of us and Jeremy's cousin is calling to find out where in blazes we are. We were given the go-ahead and met Jeremy's cousin and his family downstairs. AJ's 2nd cousin was so sweet...she gave us a glow-worm for AJ. This was the first time we heard, "He's so little."
As we drove back to their house, I was super stressed. It was noted and suddenly we arrived home to pizza and margaritas-the latter of which was my request! We were welcomed with a cute basket packed with baby items and a pack n' play set up for AJ.
Hello USA...Hello Texas!
We had a nice laid back evening, letting AJ roll around on his Quilt of Love and sitting outside enjoying the one another. We realized he was sicker than we thought. He most likely had an infection that was now trying to work its way out. I began to get nervous about the plane ride home. That night AJ woke twice to eat. I woke up automatically, just before he did. Weird. I fed him and found myself restless. I wandered into the den and watched TV for a while. I just could not shake this odd feeling I had....
We waited and waited and finally called him. He stated he needed to take the boys to have their US Embassy examinations done. We were stunned that hadn't been done beforehand, but we didn't have much of a choice. He said he'd be done around 3 and would call us.
4 o'clock rolled around and we called again. No answer. We continued to call and finally received a call back stating he was done, just leaving the hospital with the boys, and would bring them to us. WHAT?! Ok fine, but that's weird. I guess we don't get back to the orphange, say goodbye and THANK YOU, and give our gifts in person. Fine. As long as we get AJ...As long as we get AJ.
At 5:45pm his car finally pulled around. We saw one of the nineras get out of the car and walk around the side. That told me that had dropped off one of the boys already. Then the other ninera got out with AJ. She carried him into the hotel with the other ninera and Roberto following her. I could barely concentrate. He was sleeping. He was tiny. Still. Roberto greeted us, gave us a giant folder and a giant envelope, and literally said, "Good Luck, Have a Nice Life." The ninera handed AJ to me and asked me if I wanted the blanket he was in. I declined. Why I remember that...Guatemalan's tend to dress their children in layers, warm layers, even when its 90-100 degrees outside. Roberto started to leave, rather abruptly, and we stopped him, saying we had gifts for him, the nineras, especially Sylvia-AJ's caregiver, and some other things. He said something swiftly to the nineras about the gifts and Sylvia, and left.
And there we were. In the dark-quiet lobby of our hotel, with this little boy. Who was now FOREVER OURS. For the first time in this whole process, I panicked. He was ours. We would be boarding a plane with him in a few days, and actually taking him home. Surreal. A wonderful family from Ireland saw us in our early forever moments with AJ and said (in his awesome Irish accent), "Is this him? AH, congratulations. I'll leave you be, this is a special time." And it was. We eventually pulled ourselves off the couch and took AJ upstairs. We stripped him down to his onesie. He woke up and gave us the sweetest grin. We fed him a bottle and a half (that he chugged)and put him on his Quilt of Love for the very first time. ****As I am writing this, I've been plowing through a box of tissues. As I write, I view the pictures in our "Pick-Up" trip folder on the computer. I think I've stayed away from these pictures (& most of all the videos) just for this very reason. I don't ever want to feel these emotions again. Yet I am, as I am writing I am thinking: How on earth could this have happened? How did no one know? How did we not know? How could they lie to us or just not see all of this? He can't hear me so why was I talking to him? Would it have been different if we knew? Could we have gotten him sooner? Now I watch the videos and see things that we didn't see then. What blinds me now is what I didn't see then. What blinded me then is what I can't see now. All these memories we had thought would be so perfect, are now so heartbreaking. And to think, it was only the beginning....****
We spent Saturday and Sunday bonding with our son and visiting with other families. When we first booked our trip, we were disappointed we've have to spend an extra two days in Guatemala. AJ was once again, SICK. Stuffy, congested, had a runny nose and a fever. He adjusted well to the "American" formula we had brought along and we figured out he still had not been given solids. Grr. He's not holding his bottle-thats strange since they prop them early on. Hm. The bald spot on the back of his head had gotten much larger, including a small oval-shaped area that was scar tissue. He stared at his hands. He banged his head in his crib. He was still a thumb sucker-how cute. He wasn't sitting up-at all. Hm...he's not responding to us all the time. Maybe he just ignores loud sounds since he's used to the orphange being loud. Yeah, thats it. Well see when we get home.
Early Monday morning we met with our translator/coordinator for our US Embassy appointment in our hotel lobby. He checked over our paperwork and walked us over to the Embassy.
It is an odd feeling watching Guatemalans look at you as you are entering the US Embassy with one of their own. It was not a hostile environment at all, but I can imagine there is some grief associated with seeing 50+ children and their new adoptive families enter the US Embassy each day. Think DMV. Busy. With lots of babies. That, in a nutshell, is the US Embassy.
Our translator/coordinator was wonderful. He lead us through each of the steps, most of which were waiting! We were told that the US Embassy doctor's report stated developmental delays. DUH. He was a premie, he's an orphange baby. Yeah, yeah, its all in place for when he gets home. AJ fell asleep shortly after we arrived and slept through the entire 4 hours we were there. He was officially ours in the eyes of the US. One of us had to return to the Embassy the next day to pick-up AJ's VISA.
We walked back to the hotel and put him down for a nap. I remember the outfit I put him in for the big day. It was a 3 month outfit that was big on him (at 13 months old), but we managed to make it fit. He looked like a little golfer. When he woke up we took him outside in the courtyard. It was an absolutely gorgeous day. We hung out with fellow families and watched AJ touch grass for the very first time.
The next afternoon we again, hung out with fellow adoptive families and waited for the "Dads" to come back from the Embassy with the VISAs. All went well. It was official-AJ could leave Guatemala and enter the US!
We went back to our room and started packing for our flight out the next morning, making sure not to forgot our precious cargo! That Wednesday morning I was wound very tight. I didn't even realize it till I had a near meltdown when suddenly AJ didn't like the Snuggli. We said our goodbyes and loaded into our regular taxi. We started driving and our taxi guy, congratulated us. (Guatemalan's do not use car seats, so AJ was on my lap) When we turned off of the main drag to take his shortcut to the airport, I began to cry. I felt joy. I felt pain. I felt guilt. I felt relief. I felt it all. Here we were taking this little baby away from everything he is supposed to know as life. Here we are fulfilling our dreams. We pulled up to the airport and received the typical "stares" from the locals and quickly made our way to the check-in counter. We tried to get an upgrade to First Class, no luck.
We boarded the plane by way of a new jetway that had glass walls. I started to cry again. I snapped a picture of Jer & AJ on the plane before we took off, cause I just didn't know what the flight would be like with a baby on board.
He was fine, after he decided to have a blow-out diaper as we went up. That fasten-seat belt sign could not go "off" fast enough! I was so worried about keeping him quiet. FYI, you can't hear diddly on a plane. Nevertheless, you can hear things as you descend. AJ screamed the entire descent, while the flight attendance said, "Oh, you can give them a bottle (Um, yeah, he didn't want it) or give them these drops." (Um, no pharmacy on board and I'm sorry, I"m doing the best I can). Needless to say, we deplaned and I was once again wound tight. AJ even whimpered as we rode down the escalators in the airport. I think his ears were still trying to adjust. We made our way to the line for customs/immigration and then sat in a very warm room while everyone went ahead of us and Jeremy's cousin is calling to find out where in blazes we are. We were given the go-ahead and met Jeremy's cousin and his family downstairs. AJ's 2nd cousin was so sweet...she gave us a glow-worm for AJ. This was the first time we heard, "He's so little."
As we drove back to their house, I was super stressed. It was noted and suddenly we arrived home to pizza and margaritas-the latter of which was my request! We were welcomed with a cute basket packed with baby items and a pack n' play set up for AJ.
Hello USA...Hello Texas!
We had a nice laid back evening, letting AJ roll around on his Quilt of Love and sitting outside enjoying the one another. We realized he was sicker than we thought. He most likely had an infection that was now trying to work its way out. I began to get nervous about the plane ride home. That night AJ woke twice to eat. I woke up automatically, just before he did. Weird. I fed him and found myself restless. I wandered into the den and watched TV for a while. I just could not shake this odd feeling I had....
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